Wednesday, December 15, 2010

Christmas Program This Evening

In other news, my son's school (the upper grades) is having a Christmas Program. We'll be leaving the house in about 20 minutes or so. It should be fun. He's the first narrator.

Eddie and I worked on his Social Studies chart this evening - talk about pulling teeth! I'm glad that the worst part of it is completed. He now needs to finish filling in thee parts of the chart. But he can do that at school.

I had lunch with Heather, today, of My Xeloda fame. She also paid for lunch which was very sweet of her. Thank you, Heather! Local Boyz was our choice! Yum! I ran errands to Michaels and Border Books this afternoon. Chatted with a colleague about indigenous cultures and reviving them. So, an enjoyable afternoon.

Tomorrow, I have acupuncture first thing in the morning. Then, I will write my final report to NSF and do the IRB close out.

Then, I'm done until January 3. I think I need a break. Relax. Enjoy the holiday. Have fun and put off any treatment decisions until next week.

I'll finish my Christmas cards this evening. Yay!

Visits Today

I saw both the wound care nurse and the surgeon today. They both agree with me that they feel that the whole area under my armpit is not improving with this cycle of Abraxane.

My wound care nurse tried to remove what looked like it might be slough, or dead tissue, from the deep part of the wound. However, when she tried, it would start bleeding. If it was dead tissue, it wouldn't bleed. It looks unusual, too, so she suspects that it's cancer.

The surgeon looks at the wound and he felt that the whole area - particularly in the back of the arm where most of the satellite lesions are - felt hard again, meaning that there is probably cancer throughout the area.

Not the greatest news one wants to hear. On the other hand, I'm glad that we're all monitoring the situation like we are so we can do something about sooner rather than later.

At the moment, here's my plan: first, talk to Dr. K and ask him to talk to Dr. D at UW about maybe prescribing Imiquomod for the skin mets. I see Dr. K next Monday and will broach the topic with him.

If he'd rather go another route, then it looks like surgery will be the next consideration.

I tend to think that since Abraxane has knocked out those lovely Herminator-2 cells, I no longer have both working together to knock out the cancer. So, it makes me wonder again if I should, perhaps, go off Abraxane for a few weeks and allow my body to regenerate Herminator-2 cells and then go back on it.

Tuesday, December 14, 2010

A Treatment Plateau?

In the last week or so, I began to think that I've reached a treatment plateau. I say this because in the last couple of weeks I have had some new satellite lesions that have cropped up around the wound and they don't seem to be shrinking or disappearing. In fact, a couple seem bigger, but that may be due to inflammation (which can be a good thing - a sign that my immune system is sending Herminator-2 cells there to do battle). I think it is inflammation because my whole shoulder joint is feeling tight and swollen and is becoming more achey. But maybe the satellite lesions are bigger because they are growing - we just don't know for sure. In the end, the dramatic changes and reductions in the tumors that I had in October and into November seem to be slowing down. Darnit!

I think I'm reaching a plateau with Abraxane because I don't have as many white blood cells - the total numbers of white blood cells is about 1/3 (or a bit more) than what they were before I started Abraxane. So there are less Herminator-2 cells running around killing the cancer cells. I had one idea which I brought to my doc's office, which was to let me go off Abraxane for a few weeks and allow the Herminator-2 cells to grow again. But as my oncologist's nurse practitioner staed, we don't know that that would work, so I risk tumor progression whereas we do know Abraxane is working at some level.

Then, to top it off, my side effects, which were relatively minor to begin with (digestive issues, acne) seem to be getting worse. The fatigue is about the same and of course I'm still bald. But the constipation seems to be lasting longer, and over the last week, my kidneys were achey, which tells me that my body is finding harder to flush the toxic chemicals out of my body. The herbs are helping - my acupuncturist put me on a new one last week, but it took me a couple of days to figure out the best way to take it. She said not to take it in capsule form, but to either swallow the powder with warm water or to steep it as a tea over night. By the time I got into a new habit with steeping it overnight, I was constipated. My face has also been breaking out quite consistently in the last week.

So, I'm already thinking of what to do next or one option is to add something to my treatment regimen in addition to the Abraxane. The UW Tumor Vaccine Group has another clinical trial for skin mets, which combines Abraxane with Imiquomod, which is an ointment that has been used with melanoma (I think). I don't want to travel to Seattle, however. I would have to be in Seattle for the first treatment for at least a week. I can't afford that right now.

Dr. D. from UW did say that Dr. K would be able to administer Imiquomod here as it is an FDA approved drug. I see Dr. K next week, so my plan is to have him call Dr. D and see if maybe I could add this to my regimen. That is, of course, if he agrees that the satellite lesions are not disappearing.

I also see the surgeon and the wound care nurse tomorrow. I will say that the overall wound is healing, slowly but surely, it's just the satellite tumors that are worrying me. Maybe the surgeon or the nurse have some ideas . . .

It could be that I'm already becoming tired of Abraxane. I am starting to get tired of being bald and the acne and the digestive issues are annoying This Friday, I will have finished three cycles of Abraxane. I will be halfway done. I think the weekly schlep to get an infusion is getting to me - even though the nurses are great. But I get tired, both literally and figuratively, of not sleeping. I think that as long as I had such an impressive response, the side effects seemed minimal, but as they get a little bit worse and I'm not responding like I was, it's getting old.

I also admit that the work stress has been greater lately - trying to put in an application for release time, a grant proposal, and changes to an article, not to mention teaching the class, grading papers, and now recommendation letters, etc. - it's been a really busy few weeks. Productive, but stressful because of deadlines. I wanted to get another grant proposal out this week, but it's not working out that way. I think it's time to lower my expectations and take a break for a couple of weeks. The point is that the work stress may be contributing to my decreased response with Abraxane.

And, there's financial stress. I keep getting statements from Samaritan Health Services - even though I've met my out-of-pocket maximum, their billing office has consistently forgotten to post an insurance adjustment on my account, so each month, I get bills for $100 or $200 or $300. This means I have to call them, tell them they are missing an adjustment, and verify that I don't owe them money. To top it off, I had my teeth cleaned a few weeks ago; usually insurance pays for this, but it turns out that my dental insurance will only pay a maximum amount each year. I reached that maximum after my crown this summer, so after the fact, I found out that I owed $200 for a teeth cleaning. So, I paid that bill, which meant less for Christmas spending. I also admit to spending more than intended for Christmas . . . so money is tight. I haven't been extravagant. I bought some presents for the Giving Tree tags. I also went to the coast for the night last weekend. I didn't spend much there, but I guess it all adds up. A couple of months ago, I think I figured out that I've spent about $5,000 in medical expenses this year. My $1,000 out of pocket, plus the trips to Seattle (even though I got about $1500 in donations, I probably spent maybe an additional $750 or so), plus over $1,000 in dental, plus acupuncture, wound care dressings, herbs and supplements and mileage. It all adds up.

Okay, enough whining. Time to live in the moment and enjoy the holiday. Let go of stress. I need my immune system to be working at an optimal level. Stress doesn't help!

Friday, December 10, 2010

Busy busy busy Part 2

This week continues to be busy - both at work and holiday happenings. I had two appointments on Wednesday morning and then did a bit of work in the afternoon. I picked up Eddie from school and rested, and then I went to a holiday gathering at the Center for the Humanities and then to the OSU Bookstore sale for faculty and staff. I am done with my holiday shopping; well, except for Eddie's Secret Santa gift at school.

The holiday party at the Center for the Humanities was fun - good food and wine - because I was able to chat with colleagues I didn't know. It's always good to get to know other people.

The books at the bookstore sale were 30% off as was the clothing. I found a couple of Giving Tree gifts and then found a pasta cookbook which was on sale for $5 and with the 30% discount, it was $3.50! I love that kind of sale! Dad says he wants to start cooking more pastas . . .

Yesterday, I had a free morning, so I finished up a course proposal and graded all but the last assignment for my class. All that's left now is grading the last assignment, which I hope to do today and get my grades in.

I had lunch with this man I met through match.com yesterday - we had lunch last Saturday and it went pretty well. It was a fun conversation on Saturday, discussing everything from astronomy to reincarnation to meditation to diet to my work. Yesterday, we talked more about his work and autism. I'm not sure when we might get together again . . . at the very least, our conversations are interesting!

The Dean's office had a holiday party so I visited with a few people there and then some of my female colleagues and I got together for Happy Hour. Really interesting conversation about politics on campus. I stayed out too late - didn't get home until about 7:45pm. So, I'm tired today.

Just got my labs back and my blood counts are all good, so I'll be getting Abraxane today. After grading some papers and making travel plans for Hawaii in February, I plan to pack for an overnight trip to the Coast. It's my friend's birthday. My friend, her dog Shika, Eddie, and I are driving over after school today. We're going to Florence and the plan is to go to Lincoln City tomorrow to take Eddie to the children's arcade at Chinook Winds, but we're supposed to get another visit from the Pineapple Express - i.e., lots of rain that is apparently from Hawaii due to La Nina - so we'll see if the weather cooperates. The coast is supposed to get 3-5 inches of rain in the next day or two. It may cause landslides or washouts on the road. I'll monitor the situation and see what happens . . .

Well, I guess I better do some work. I want to avoid grading papers . . . but the sooner I finish them, the freer I'll feel!

Tuesday, December 7, 2010

Busy busy busy

I've had a busy few days.

I couldn't sleep well on Friday night - thanks to the steroids - so I was tired on Saturday. I relaxed a bit on Sat., then had a date for lunch, then it was home again to rest. Even though I was tired, though, I had some work to do. I had som edits to do for a co-authored article, then I drafted an application for research release time and wrote up a blurb for the King Island website for a newsletter. I even typed up everything.

Got a decent night's sleep on Saturday night. I decided since I had worked all afternoon and evening on Saturday that Sunday was a day of no work. So, mom and I picked out some gifts for two tags I got from Eddie's school's Giving Tree. I also had to return a pair of pants I bought for Eddie that were too big. Then, Eddie's dad dropped him off at Kohl's and then we went home. I spent the rest of the afternoon and evening beading and we also watched movies. Harry Potter movies were on one of the satellite channels and then dad got the Sorceror's Apprentice. That was fun.

On Monday, I edited the release time application and got the necessary signatures and submitted it to the Research Office, then I typed up a letter of support for a colleague, and then edited various pieces of the grant proposal - and then that got submitted! Yay!

I also had a faculty meeting on Monday afternoon. We were trying to figure out what the new chain of command was - and who was responsible for what - but in the end, I don't think much got settled. As far as I'm concerned, it's out of my control. If there is anything I need to do, I just ask before I do it. That way, I'm covered. I figure I'll wait for the dust to settle and not get too stressed out about things. Keep a low profile, in other words.

Didn't sleep as much as I wanted last night and we got up early to go to Shriner's Hospital - Eddie had an appointment. In the end, we're not going to do anything although we may, in the future, do surgery to stabilize his right foot. We finished earlier than expected, then looked around downtown, had lunch at Buffalo Wild Wings (where Eddie played a trivia game), and then spent three hours at OMSI. We all enjoyed our time there! We didn't get home until 5:45pm - so a really long day. Poor Eddie had some homework - he's been at it ever since. He's coming down with a cold.

Tomorrow, acupuncture and wound care. Then, a meeting on the new Native American Cultural Center, then grading papers. In the evening, a holiday get-together at the Center for the Humanities and then the OSU bookstore sale. I still need to finish my beading project.

So, I continue to be busy. I am trying to give myself a chance to rest . . . kinda hard with so much going on at work and for the holidays. But it seems that I have the energy to do all the work . . .

A big thanks to my folks for cooking dinner and grocery shopping and cleaning. I wouldn't be able to do all that work if it weren't for your help!

Friday, December 3, 2010

Da da Da da Daaa da . . . Da da Da da Daaaa da!

What in the heck is that title mean? Think dancing, maybe even line dancing. Oh, yeah! It's the beat to the Conga line! (I think!) Where the last syllable is kinda loud, like it pops.

Why am I dancing?

Well, I just got my CEA tumor marker today. Guess what? It was even lower today than last month. It was 3.4 ng/mL. That's less than half of what it was in November. Anything 3.8 or less is considered normal. So, yes, I guess I can be considered normal! (Well, I'll think of myself as more normal when that wound heals and the satellite nodules disappear.)

I had both zometa and Abraxane. Maybe I should say, it's an "A to Z" Day. I also had good blood counts - my hemoglobin was 10.8. My white blood cells counts are about half what they were before starting Abraxane, but still decent.

Anyway, here is the history:

CEA
1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
8/2008 - 1.1 ng/mL (need to double check this number, but it was in that 0.9 to 1.2 range)
9/2008 - 0.5 ng/mL
10/2008 - 0.9 ng/mL
10/31/2008 - 1.2 ng/mL
11/28/2008 - 1.2 ng/mL
12/30/2008 - 1.1 ng/mL
3/2/2009 - 1.4 ng/mL
4/8/2009 - 1.6 ng/mL
5/5/2009 - 1.9 ng/mL
6/4/2009 - 3.0 ng/mL
7/2/2009 - 3.7 ng/mL
8/3/2009 - 4.2 ng/mL
8/31/2009 - 5.1 ng/mL
10/2/2009 - 5.7 ng/mL (or was it 5.8?)
11/2/2009 - 7.6 ng/mL
11/30/2009 - 10.5 ng/mL
12/28/2009 - 13.2 ng/mL
3/8/2010 - 22.9 ng/mL
4/22/2010 - 28.9 ng/mL
6/7/2010 - 46.3 ng/mL
7/19/2010 - 44.3 ng/mL
8/19/2010 - 50.9 ng/mL
10/05/2010 - 41.6 ng/mL
11/04/2010 - 7.1 ng/mL
12/03/2010 - 3.4 ng/mL

It hasn't been this low since before July 2009 - almost 18 months! Wanna join me for a Conga line? Da da Da da Daaa da . . . Da da Da da Daaa da!

Wednesday, December 1, 2010

Terra Magazine Blog Post about the Place Names Web Launch Party

Hello.  Just a quick note to give some more publicity to the Web Launch party I put together on Monday, Nov 29.  The link to the Terra Magazine blog post is at:

http://oregonstate.edu/terra/2010/12/a-name-for-home-king-island/

Enjoy!